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Rare diseases: what are they and how many people are involved. Youtube and TV


This wonderful cartoon by Bruno Bozzetto that perhaps there 'already' says the children have seen a topic on which 'important to be informed.
E 'out these days to remember that this weekend you will find in many cities' Italian event dedicated to attract the 'attention to a class of diseases that contrary to what the name would suggest are not as' those that are infrequent collected under the name: Rare Diseases.

The date on which 'was originally set and the event' Feb. 29 that it is a day that occurs every year sees the weekend more 'near as dedicated to this subject as' important.

involving about two million people in our country, unfortunately, many are chronic, progressive, degenerative, and often, painful. There is no cure today for the 6000 - 8,000 rare diseases identified, of which approximately 75% affect children.
As reported in the press release that you can read in full on the website of ' We join with many other information

"The main objective of Rare Disease Day is to raise awareness and decision-makers to the fact that patients suffering from Rare diseases are a public health priority. Organised by the National Alliance for Rare Diseases EURORDIS members and partners, the Day of Europe on February 28 focused attention on the many problems faced by those living the condition of being "sick rare" , that is suffering from chronic debilitating, and the daily challenges facing those affected.
year the Rare Disease Day focuses on health inequalities that exist for patients with rare diseases within and between regions, supporting equitable access by patients to health services and few social services health. Slogan of '2011 is, in fact, rare but equal. "

" In the case of people with rare diseases, the lack of health care between the various European countries and within them are much more serious, "says Executive Director EURORDIS, Yann Le Cam. "It is our responsibility to promote equal access to best care available to all patients, regardless of the disease that has affected them and the country in which they live. "

in our city 's main event and' this .

Another good news for our readers in our cities' concerns the door of Rare Diseases of Liguria, established and operating at the Istituto Giannina Gaslini Genova number
Phone 0105636937, Fax 0108612071, e-mail @ malattierare regioneliguria. com.

The toll free number (800896949) for each national information and 'managed by the National Center for Rare Diseases, Istituto Superiore di Sanita'.